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kathy0116
Posts: 1
Joined: May 2002

My name is Kathy. In Feb 02 I felt a lump in my neck. I can't remember when I first felt it but I think it had been there for a long time and I had been ignoring it. I am 38 years old and the mother of a three year old son and a ten month old daughter. My husband is a physician, a gastroenterologist to be exact. I asked him to feel my neck and as usual he said it was nothing, probably a swollen lymph node associated with a cold I was fighting. He protested but I called a friend of ours who is a radiologist and he offered to scan my neck at my convenience. My son had a three year old check up scheduled later that week so I met with the radiologist before that appointment. He discovered a large nodule on the right side of my thyroid. We walked over to the office of the "thyroid man", a doctor triple board certified in internal medicine, endocrinology and nuclear medicine. He felt my neck and reviewed the scan and ordered an radioactive iodine scan and uptake. He said he didn't feel anything in my neck that would lead him to believe it was cancer but due to the size of the nodule, he felt that it should be removed. The results of the uptake study showed a cold nodule. The ENT performed a FNA, the results of which were benign. We scheduled surgery for 19 March to remove the right side of my thyroid. The frozen sections during surgery were benign and my surgical recovery was unremarkable. I returned to the ENT one week post op to have my stitches removed. I was in a hurry as I was on my way to the final walk through before closing on our new home. The ENT informed me that the final path report showed multifocal papillary carcimona with a solid/trabicular variant. The solid/trabicular variant was something that was stumping the pathologists so my slides were sent to a world renowned expert in this area who concurred with the orginal diagnosis. I scheduled completion thyroidectomy for 7 May since I needed time to settle us into our new home, make arrangements for help with the children and cancel several scheduled travel plans. The second surgery has left me with a few very unpleasant complications. The final path report showed no cancer in the left lobe of my thyroid but the doctors don't seem fazed either way by this seemingly good news. I am scheduled for radioactive iodine ablation on 18 June. I developed a wound seroma that needed to be drained. 25 ccs of fluid was removed from my neck last Monday. This fluid almost immediately recollected and I was back in the ENT's office on Tuesday. He aspirated 10 ccs more and placed a drain and a pressure dressing which my husband changed twice a day. On Wednesday evening the drain fell out. I was sceduled to have the drain removed on Thurday morning so I waited until then to return to the hospital. The ENT thought everything looked OK and he did not replace the drain. He placed a band aid over the incision site and sent me on my way. The fluid continues to collect and drain through the still open wound in my neck. I will see the on call ENT tomorrow a.m. The ENT said this is the first seroma associated with a thyroidectomy that he has seen in fifteen years. He tells me to take it easy. My husband returns to his clinical duties on Monday and I will resume primary care for our two children. I have hired a nanny to assist me during the next few months but she doesn't start until 31 May. I plan to take a much needed R&R week after I am deemed to be radioactive free following my ablation. The "thyroid guy" is reluctant to perform my ablation in the hospital. He says most ablations are now done on an outpatient basis. I refused this option because of the radiation exposure risk to my two young children. He says I could exercise special precautions such as shutting myself off in a room away from my family. Is this guy for real? Anyway to whoever has hung in there and read this entire vent, I thank you. I am angry. I don't know why this is happening to me. I am mad at my physician- husband for not picking up on this sooner. I know it's not his fault but I find myself blaming him for trying to blow off my initial complaint. I worry about whether this cancer has spread to other parts of my body and whether this cancer puts me at an increased risk for developing other forms of cancer. I would appreciate any and all correspondence. Thank you

Kathy

sheafor
Posts: 5
Joined: May 2002

Dear Kathy,

I am having trouble using the regular cancer page, but I will happy to correspond with you. I am also newly diagnosed and a wife of a physician. If you would like to email me I would like to talk with you further.

sheafor@adelphia.net

Cathy

sharonmitchell
Posts: 5
Joined: May 2002

Hi, Kathy
I too was mad at the world when I was first diagnosed. I was twenty one, fresh out of college, hitting the "legal bar scene" and all of sudden there was a lump on the back of my neck. First dr thought it was an infection from eating uncooked fish from my trip to Florida. However, when the lump was not gone in three months, I went to another dr. This dr was a piece of work. She did a biopsy. Upon my followup visit with this dr on my way to work, the drs saids you have thyroid cancer any ques.? I can not tell you how my world stopped. I left her office numb, went to work and cried all day. After further discussions with my family, I went to another dr and another hospital. I was told that the cancer in my neck was from the thyroid. The cancer broke through the thyroid, parathyroids and was spreading into my lymph nodes and chest cavitiy. Furthermore,the dr at that time felt I would lose my vocal cords, shoulder muscle, and have a permanent tracheomy. Needless to say,I still have my voice,my shoulder muscle and no trach. Today ,I have a endro dr who is very proactive in treating thyroid cancer. At times, when the M131 scans would not isolate the thryroid cancer yet other signs would indicate thryoid cancer recurrence, he would try diet methods used at Mayo Clinic which seem to prove the cancer was still present. My endro would listen to explanations of symptoms, how I was feeling and what I thought. My dr would provide detailed information and explanation about treatment and risks.I belive that you and your doctor are your best avocates. You must be persistent. I will tell you that you must followup regularly with your endro to ensure that if the cancer reoccurs, treatment can occur immediately. From my discussions with my drs, thyroid cancer can lead to bone cancer or lung mets if not treated. Please promise me that you will followup with your drs no matter what anyone saids including your husband. Because you only have one life to live... live your life healthy.Thank you for reading my correspondence. Wishing you the best of health. Good luck
Sharon

kathyrn
Posts: 2
Joined: Jun 2002

Dear Kathy--I can understand about your anger, it is difficult to be diagnosed with cancer, and then not feel you have adequate information as how to handle the situation. I too was diagnosed with multi-focal papillary Ca, (with follicular variant). Your question about the radioIodine ablation (RIA) therapy is a very good question. There are many different doses of the RIA therapy, the decision regarding the dosage depends on the size of your Cancer and the staging. 150 MCI's is the dose I took, for a 2 CM multifocal cancer. There are federal standards about being isolated behind steel walls etc. until you have cleared the radioactive substance. The doseage of 30 MCI is for partial ablation, not cancer, and can be administered at home with isolation from children and animals. It sounds like you need a endocrinologist who is experenced in dealing with thyroid cancer. hope the best for you--Kathy

klieb
Posts: 2
Joined: Nov 2002

Kathy, it is 12:45AM in South Florida and I just read your message back submitted in May. I recently just had my second surgery to remove therest of my thyroid. The doctors swore that the large left nodule was benign until the path report came back a week after surgery with papillary cancer. I had the second surgery last week to remove the rest of the thyroid- which included a small nodule on the right that had 8 mm of cancer. I too have two small children. I am currently observing a strict no-iodine diet in preparation for the RAI. How did your RAI go? Did you experience any side effects. You mentioned that you developed a wound seroma which I hope has since healed. I am going out to MD Anderson for a second opinion to ensure that the Endocrine surgeon removed all the thyroid. I feel this is almost a needless trip which has created a lot of extra pressure on me to fax reports and fedex path slides, but my family members insist I go. Do you have any feedback on the process and what was your follow-up schedule. Do you know the possibility of reaccurrence? Thanks, Kim

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